Blog: National Partnership for Action

Partnership

A generation ago, almost 15 percent of children in the United States born with sickle cell disease died before the age of two. Many more died in their teens. 1

Today, babies born with sickle cell disease face a far more promising future. Children and adults can benefit from treatment options that help mediate complications of the disease. According to data from CDC's National Vital Statistics System, the proportion of deaths from sickle cell disease among children decreased from 12 percent in 1979 to approximately 3 percent in 2006. Since the signing of the National Sickle Cell Anemia Control Act 41 years ago, considerable progress has been made in biomedical research, disease surveillance, and care coordination.

But as patients and families know all too well, barriers to care and quality treatment persist. Between 90,000 and 100,000 people in the U.S. currently live with sickle cell disease, making it the most common inherited blood disorder in the country. Minorities bear a disproportionate burden, with the disease occurring in roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births. And far too many have struggled to access the quality care that they need to manage the disease and live a healthy life.

By directly addressing barriers to care and coverage, the Affordable Care Act has created new opportunities for those living with sickle disease to access affordable, high-quality health insurance and medical services – opportunities that many may never have had before.

Because of the law, sickle cell disease and other pre-existing conditions can no longer be grounds for denial of coverage from health insurers – a provision of the law that would provide security to 129 million Americans with pre-existing conditions.

Young adults living with sickle cell disease can now stay on their parents' health insurance until the age of 26, ensuring smoother transitions from pediatric care to adult care.

In addition, screening for sickle cell disease among newborns is now one of the preventive services covered at no cost under the Affordable Care Act. Thanks to the law, approximately 71 million Americans can now access these screenings and other important preventive services without having to pay a co-pay or deductible.

The law is also helping community health teams to explore new opportunities for improved disease management through the Centers for Medicare & Medicaid Services' (CMS) Innovation Center – and expanding access to care through investments in community health centers, where nearly two-thirds of patients served are people of color.

Meanwhile, agencies across the Department of Health and Human Services are working to make the most of these opportunities. At the Centers for Disease Control and Prevention (CDC), researchers are studying how sickle cell disease is managed at the community level through a state-based project called PHRESH (Public Health Research Epidemiology and Surveillance of Hemoglobinopathies). Using data collected from the program, CDC is helping states build capacity to monitor health system changes stemming from the Affordable Care Act – giving them the tools they need to identify the most effective interventions, highlight quality measures, and zero in on the "hotspots" of chronic conditions where they are needed most.

At the Office of Minority Health, one of the office's strategic priorities – leading the implementation of the first-ever HHS Action Plan to Reduce Racial and Ethnic Health Disparities – includes strengthening the cultural and linguistic competency of the health and health care workforce to improve health care quality and reduce health disparities. And as implementation of the Affordable Care Act continues, the Office of Minority Health's outreach and education efforts in minority communities are helping to reach those living with sickle cell disease and others who stand to benefit most from the health care law.

Three years after its passage, the Affordable Care Act has touched the lives of millions of Americans – including the thousands living with sickle cell disease. And this is just the beginning. On October 1, millions of Americans will have a chance to enroll in affordable health insurance coverage through the new Health Insurance Marketplace, with coverage beginning as early as January 1, 2014. While the fight against sickle cell disease continues, the health care law is giving patients and families affected by sickle disease unprecedented opportunities for improved care and expanded coverage – and new hope for a healthier future.

Learn more about the Affordable Care Act and the Health Insurance Marketplace at
www.healthcare.gov.

'Clean air' is a concept that resonates with Akeelia Adams-Smith, a mother of two living in the north side of St. Louis, MO. She and her children suffer from asthma and symptoms that are often triggered by poor air quality. Akeelia has started following recommendations to ensure that her family has healthy air quality within their living space, and is now taking action to reduce outdoor pollution.

Akeelia is one of many concerned African American parents in her community. According to a study by the St. Louis Regional Health Commission, black children in north St. Louis are approximately seven times more likely to visit the emergency room for asthma than white children.

Akeelia and others shared their stories during the Clean Air Health Fair on April 27 to raise awareness around the issue of air quality. The event was hosted by Mt. Carmel Missionary Baptist Church in St. Louis with support from the National Climate Action Plan, and the Heartland Regional Health Equity Council under the National Partnership for Action to End Health Disparities, led by the U.S. Department of Health and Human Services Office of Minority Health. The fair, which was attended by public officials, advocacy groups, academics and local faith leaders, was designed to raise awareness about climate change and how it will impact the health of St. Louis residents, with special attention to air quality.

Speakers included EPA's Region 7 Administrator, Karl Brooks, who highlighted the link between the changing climate and poor environmental conditions, such as reduced air quality. Spurred by the commitment that President Obama made during his second inauguration to minimize the health impacts of climate change, Mr. Brooks emphasized a renewed commitment by the EPA and other federal agencies.

Other speakers included Rev. Earl Nance Jr. of Mt. Carmel Missionary Baptist Church, Dr. Roger Lewis of St. Louis University, St. Louis County Assessor Jake Zimmerman and Akeelia Adams-Smith. Whether from a faith-based organization, academia, public service or the community, the speakers united under the common goal of promoting scientific literacy and minimizing the impacts of climate change and poor air quality.

The remarks of each speaker were extremely encouraging, conveying broad and scientifically complex topics in a way that was relevant to the specific needs of the community. Moreover, the active engagement of the attendees with speakers and organizers represented the type of dialogue that gathers people from all walks of life to address the multi-faceted causes of health disparities.

Several organizations and partnerships committed to addressing climate change and asthma in the St. Louis area participated in the event. Through handouts, trivia and conversations, community members and church attendees received facts on climate change and air quality. More importantly, they received resources and information on steps they can take to minimize their energy consumption and protect their health and the health of their loved ones. Among the resources provided were mattress covers, water bottles, guidelines for home weatherization, example emergency plans for extreme heat and weather events, and instructions on checking air quality and minimizing asthma triggers.

The organizations providing helpful information at the fair included:

City of St. Louis Health Department

Missouri Coalition for the Environment

Sierra Club

Community Action Agency of St. Louis County

St. Louis County Health Department

White Caps, Green Collars LLC

M-Slice

St. Louis University

Through the commitment of the participants and organizations represented at the Clean Air Health Fair, Akeelia Adams-Smith and her fellow community members can look forward to experiencing healthy air quality in the years to come.

Goal: Q&A with Mirtha about the NPA and National Stakeholder Strategy. The content will explain what the National Stakeholder Strategy is and how it will be implemented.

OMH: What was the impetus for the National Partnership for Action to End Health Disparities (NPA)?Mirtha Beadle: The U.S. Department of Health and Human Services established the NPA in response to a call from communities across the country for a nationwide, comprehensive approach to achieving health equity.

For too long these leaders and advocates have been working in isolation to combat health disparities. The NPA is intended to refocus and advance existing efforts, and encourage innovations to deliver better results to the American people.

OMH: You recently unveiled the National Stakeholder Strategy (NSS). What is different about it?Mirtha Beadle: For the first time, we have a set of common goals that we can all work toward. By aligning efforts from the community level all the way up to the federal level and better coordinating public and private sector initiatives, we can increase our effectiveness, leverage resources and make a bigger impact.

The NSS addresses that so much of what affects health happens outside the doctor's office. The strategies and goals outlined in the NSS move us beyond controlling disease to tackling the unequal neighborhood and other conditions that are the root causes of health disparities. It calls on individuals and organizations within the health sector to work with others from housing, education, transportation and other sectors to address the social, economic and environmental factors that contribute to poor health - what we call the social determinants of health.

Finally, the NSS reflects the voices of the communities who are on the frontlines, grappling with these issues every day, and is rooted in their knowledge about what is needed and what works to help close health gaps in this country.

OMH: How can people on the frontlines use the National Stakeholder Strategy to address health disparities in their communities? Mirtha Beadle: We know there is a lot of action out there now in communities but it is dispersed. Part of what we are trying to do with the NPA is drive action in particular areas. We have identified five goals and by working in partnership with many other sectors we think we will get there faster and achieve more deliberate and more palatable outcomes.

Our main objective is to figure out how to start connecting activities that are working-like reducing asthma among children, improving management of high-risk conditions or increasing access to health care for vulnerable populations-and elevate them so that we drive change in a broad way. This doesn't mean that community X or Y changes what they are doing. We just want to make sure that those efforts can have the greatest impact. The first step toward this goal is the creation of 10 regional health equity councils that will use the NSS to finalize a blueprint for their region that builds on effective programs and initiatives in states and communities throughout that region.

OMH: What is the Federal government doing?Mirtha Beadle: HHS has developed an Action Plan (link) in response to the NSS, but other federal agencies play a role in addressing health disparities too, because where people live, learn, work and play affects their health as much as their access to health care.

The Federal Interagency Health Equity Team, which includes representatives of the Departments of Agriculture, Commerce, Defense, Education, Housing and Urban Development, Justice, Labor, Transportation, Veterans Affairs, the Consumer Product Safety Commission, and the Environmental Protection Agency, will guide federal agencies and their partners to work together and take action to address the social, economic and environmental factors that contribute to health disparities.

OMH: What is next for the NPA?Mirtha Beadle: Using the NSS as a road map, the NPA will continue to promote and strengthen collaboration across multiple sectors to reduce health disparities.

Our immediate priority is working with the 10 regional health equity councils to help local stakeholders identify problems, set priorities, and work together to reduce health disparities and finalize several important partnerships.

About the Blog

The NPA works to achieve health equity -- the highest level of health for all people. This blog is a venue for professionals from all fields and sectors to share their thoughts on pressing issues, news and events pertaining to health equity. Follow and participate in this candid discussion.